Last night I had a call with my primary oncologist to review the results. Not much has changed regarding the treatment path he outlined earlier. I’ll apologize in advance as there’s a bunch of jargon below that may not be easy to parse. This post is as much to clarify my own thinking as anything:). With that said here’s the current status:
- We’re still waiting on a FISH study to verify genetics (specifically expression, translocations etc for myc, bcl2, bcl6). Not sure if there’s anything else they look at. Report should come back later this week/early next. This could change treatment path if it’s different from original ‘double express’ designation. Note, it could only thicken the plot but no point speculating until we get the report. Generally it looks like the same tumor with some minor anatomical differences.
- Kaiser will re-review pathology report internally (was nudging hard). He thinks it’s more like follicular 3b, not 3a per the anatomic histological characterization (the staining), but it’s a subjective call and likely somewhere in the middle. I’m still a bit unclear how to think about this terminology as it’s always been ‘follicular’ 3b and called DLBCL. Apparently grades 1,2 follicular are managed paths (not curable), whereas 3+ is still curable, and I definitely am a ‘3’. From his standpoint it seems the designation wouldn’t change 2nd line therapy. He mentioned that CAR-T (where they engineer one’s own immunity) is only an option if 2nd line fails, so that’s another open question.
- If 2nd line fails then I would likely move to CAR-T therapy at Stanford. That would still be a curative path. When I asked about cd19 not being on the report (that’s the main CAR-T target) he said it’s not part of normal panel and there are complicated questions of sensitivity etc. that he didn’t think worth getting into. I guess they’d test for it down the line? Again, not sure how the 3b vs 3a designation bears on the situation. But Stanford would run their own pathology report in that eventuality.
- We will plan to start chemo within next 2 weeks. He doesn’t want to wait 3 weeks.
- R-gdp is his preference on second line chemo protocol. R-ice is the other one, favored at Dana-farber. He suggested choosing the one with lowest side-effects (apparently there’s no test to predict responsiveness). We’ll need to discuss this in greater detail before starting. Likely we’ll do it once the FISH results come back.
- It’s good that the cd20 receptor is highly present as Rituxin theoretically should work. He put 2nd line odds at 70% success. Proliferation rate is moderately high, not as high as before – also a promising sign.
- If this goes CAR-T and it works there is no autologous stem cell transplant needed.
- I asked about supplementing with bcl2 inhibitors (since that protein is also present on the report as a potential target) and some friends suggested it. He said he wasn’t convinced about clinical efficacy, relevance to this particular situation.
- All tissue was paraffin embedded vs. fresh frozen. Hopefully this wouldn’t be a blocker on getting any key information that might be needed for say a second pathology report.
- Is CAR-T avail as second line treatment if 3b or only if second line fails? Worth pursuing?
- Other paths/options to consider e.g., in-vitro tests etc. before jumping into treatment?
Next up I’m trying to get UCSF and more importantly Stanford opinions scheduled. Wouldn’t it be great to setup a conference call with the various docs so I’m not the one in the middle – is that even an option? Is there some service to coordinate conference calls with busy doctors so patients can make more informed choices?
- How’s the insulin response, sugar/glycogen metabolism impact cancer progression? I’ve eliminated any processed carbs, and generally eat low-glycemic carbs but haven’t gone extreme, e.g., ketogenic diets. My understanding is the basic theory is that cancer cells preferentially metabolize glucose (seems that’s at least partially true as that’s the mechanism via which the radioisotope is selectively up-taken by cancer cells in PET/CT scans), whereas healthy cells can use ketones which are basically broken down fatty acids as fuel.
- What’s the Impact of animal proteins, especially on lymphomas? I’m no longer eating meat or dairy anyway (I’ll make exceptions if my body craves it). I do eat fish – especially sardines and salmon. Should I eliminate eggs too? Some data I’ve seen suggests meat consumption is correlated with cancer in genera and in particular with lymphomas. Easy to go crazy here. There’s certainly a venn diagram with small overlap between ethical eating
- What’s the deal with (intermittent) fasting? I’ve reduced my eating window to about 10 hours per day or 14 hours fasting per day. All that means is that I stop eating early in the evening and start around lunch most days. Seems a good 80/20 solution to this from what I’ve read. I haven’t gone beyond 24 hour water fasting but there’s apparently lots of interesting info around this that I’m not up to speed on. I’m doing that while not trying to lose weight but I’ve lost 3-4 precious pounds in the past two weeks. Surgery involving moving my intestines around probably didn’t help there. Also this has been easier than usual because my appetite is complete crap, so I may need to rethink this. Again the key in all of this is remaining pragmatic and not over complicating it. All the above are fairly simple to implement, relatively non-controversial, and with little downside (Keto is the only one that fails this criteria but still seems interesting). Anyway I may find a specialist that focuses on this.
The oncologist wanted me to leave the call still feeling encouraged at the chances and that there are many options still available. So of course, one decision at a time. Meantime I’m doubling down on efforts to stabilize my perspective with meditation. Things are getting harder and I can tell my anxiety levels are increasing (at least I’m aware of it!). It can sometimes feel like each new piece of information is pulling reality out from under me. The key it seems is to achieve a much higher degree of comfort with uncertainty (or impermanence, if you prefer), which is especially hard with a family.
Finally, amidst all this I’m going to try damned hard to enjoy the next week+ to whatever degree possible before I jump back into treatment. Seems the best case is I’m on the other side of this just as the kids’ school year is ending. That said I’ll know around March if second line has been successful; that’s my Q1 objective. I’ll try to stay encouraged that the treatments are all curative and that two opinions mostly align in terms of second line next steps.